Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Friday, May 31, 2013

A couple weeks ago we took Hailey back to Utah for a follow up appointment with her Rehab doctor. This doctor is the one who had told us back in October of last year we had to start planning for the nearing end with Hailey.

Hailey was so stiff back then that she was on a pretty high dose of muscle relaxers (Baclofen) and was reaching her max fast. When we had seen this doctor in November a month later Hailey had the Botox shots in her calves and a reduced dose of muscle relaxers. She also prescribed the AFO's Hailey wears.

We saw the Dr. again in February and Hailey was doing better and didn't need Botox again, but still remained on Baclofen. Well from February until now I had thought that Hailey was doing great. We took her to Disneyland, we went on her Make a Wish, we started Physical and Occupational Therapy, I increased her days at school, and she had her 5th birthday. Not to mention that she has been sitting on the floor without assistance for longer and longer periods of time!! She does tend to timber over without notice, but that's what all the pillows are for. So when we took her to Utah I was expecting to hear that things were going great, and that we (I) was doing a great job and her tone and clonus is good...I didn't hear any of that.

I guess I tend to only hear the bad things. Her tone is still elevated, she is very tight in her hips and hamstrings, she needs to be stretched more, I guess I was doing it wrong? We had to decide either to give Hailey more Botox and the same amount of Baclofen or we have to increase the baclofen and tighten the stretch splints. Well I didn't want to do either of them, I thought things were fine the way they were with the dose Hailey is on and the splints, but what do I know? I had told Hailey she should have been born to parents who were medical professionals.

Josh and I had went through the decision of whether or not to get a DNR (Do not resuscitate) order in place for Hailey. We both decided it was something that needs to be in order because her disease is so unpredictable. The Dr. will help us to get that placed by the time we go back in August.

The Dr. was very impressed with the sitting up. She had never seen Hailey out of a bed or out of a wheelchair before. She even saw Hailey bare weight and noticed how tall Hailey is. Nearly 4ft tall and 61 pounds.

Hailey being nearly 4ft tall and me being 5ft some is becoming kind of dangerous. Every morning that it is just me home with Hailey (4 out of 7) I have to carry her down the stairs. It's easier if I just do it without thinking to much about counting the steps or attempting to look down while I step. In addition to the anxiety of the responsibility of getting Hailey down the stairs safely I worry about the constant pain I feel in my back. Hailey is going to be measured for a gait trainer that we will be able to use at home. That's a good and bad thing. It's good that Hailey will be some what independent, but we have very little space downstairs. She'll have to do circles if she ever gets the motion to propel herself. We need to get a 1 story house that will aid Hailey in using the gait trainer. I want my house to be boundless for her. Everyone knows the housing market is kind of down in the dumps so this is some added stress for us all. We are right in the middle of the Dr and Therapy appointments we have. If we find a house, what if it's farther away?

We don't have a wheelchair van. When I take Hailey anywhere I have to lift her to the car, and into the carseat. (there's that pain in my back again) I called about the grant for the modification of a van that we applied for in January and they said that it could be as soon as next year that we'd hear back from them. Um...next year isn't soon. We are kind of running short on time here. Not having a car for Hailey, so that I can take her to her appointments is another ingredient in this recipe for stress we're cooking up.

You know how people always tell you to look on the bright side, make the best of things, be positive? Easier said then done!

I've been so exhausted lately. I accidentally left out Hailey's medication that needs to be kept refrigerated. I haven't attempted to cook dinner in MONTHS (a year). Dinners are a thing of the past. I often find myself eating an apple and peanut butter and calling it dinner. I left out Hailey's therapy dough and it dried out. I'm forgetful. I will be downstairs, know I need something from upstairs, go upstairs and have no clue as to what I was suppose to get. It makes me upset and I cry. There is no nurse to help, no family to call and help, no maids to do the laundry, vacuum, or dust. It's a lot, and I know this is just me complaining about things that can not be changed no matter how hard I wish it. Through our insurance since my child is a "critical case" I get 15 minutes every 3 months to talk to a therapist. I think parents should be given automatic therapy sessions when your child has a terminal disease. Where is all the help at? I need it! When I told him about me being forgetful and tired he said: If you forget when you put your keys it's not a big deal. If you find your keys and don't know that they are keys you have something to worry about. (I guess I'm not too bad yet...)

So looking on the bright side:

Hailey has been doing great at Physical Therapy. She amazes her therapist with her will to fight or her hard headedness. When she is doing an activity and appears to be shaky they will ask and encourage her to take a rest break to which Hailey ALWAYS replies, "No!" I know I don't understand anymore about brains then what I read on the internet, but I had to ask and see if anyone knows how Hailey can go back and forth so much. 8 months ago she was a wet noodle. I couldn't hold her, she couldn't sit up, she was floppy. She's only been going to PT for maybe 6 weeks and she's starting to sit up on her own again. How is this possible? White matter doesn't regenerate itself. I know her pathways are "staticky" and that's why everything she does is so slow, because there is a "faulty connection." One of her PTs told me that there are kids that go through milestones from the beginning of life and when they have something go wrong with their brain it's easier for those children to re-learn something they already knew. Children who never "learned" something and have something go wrong in their brain have much more of an extreme difficulty to learn something they never knew before.

They have been working on re-introducing Hailey to crawling. She can not go from sitting to a crawling position yet, but once she is put into hands and knees she can hold that position. Hailey has this thing about falling without notice. We've had a few face plants, but luckily there are 2 people helping to catch her when that happens. Hailey's middle name should be determination. I'm hesitant to practice at home with her and our hard floors. I'm looking into getting a gym mat like at PT.

We've been able to take her off sleeping medication that is sedating and just using melatonin at night. We are on our way to 6 hours of sleep a night. It's not true deep sleep, but we'll take what we can get!

Hailey has been doing great in school. She was able to be out of her wheelchair and sit in a cube chair at circle time with her friends. Her speech teacher says that Hailey participates 100%.

We haven't been able to get Hailey into a Speech and Food Therapy program yet. Las Vegas is running low on pathologists. It's in the works but nothing in place as of yet. Hailey has been "talking" more and more. I've always been able to understand her, but when she converses with other people and they look at me for a translation I guess it's not as improved as I have thought it was. She says funny things all the time. I remember when she wasn't sick and she wouldn't listen to me when I talked to her and I would tell her to look at me.
Hailey was up early before Josh went to work and he put Hailey in our bed before he left. I was awake, but had my eyes closed in hopes she'd fall back to sleep. She was calling, "mom...mom...mom" when I didn't answer her I hear, "mom.....wook at me" (her L's sound like W's)

I guess it's always good to vent a little, it helps you re-think what you're griping about.

To end this very long post on an exciting note. I'm working on transferring videos of Hailey on to my computer rather then have them linger on my phone. So many people want to see what Hailey is doing now and I want to show them. It's a work in progress, don't know how long until it actually happens but it's something I would like to do. I need something positive to look forward to. I love sharing my Hailey.

Tuesday, May 28, 2013

Hailey and I are both patients at Spine Wellness Center. With Doctors telling us there is no treatment for Hailey's disease we have to find different ways to improve Hailey's quality of life. When I learned about NUCCA or National Upper Cervical Chiropractic Association I didn't know how it differed to regular chiropractic practices. I knew at a regular chiropractor they pop and crack you and I didn't want that for Hailey. This is COMPLETELY different!!

I took this from Wikipedia:

NUCCA practitioners believe that scientific investigation has demonstrated that a misalignment (subluxation) of the C1 area results in over-excitation of an area of the brainstem that controls tone of postural musculature. They believe that this stressor on the nervous system results in postural imbalances and unequal leg lengths. Posture can be analyzed utilizing different postural measurement tools although NUCCA protocol officially recognizes only the Anatometer. Leg length checks are performed in the supine position differing from other chiropractic techniques.

Hailey has been a patient of Dr. Sarah Johnson has also seen Dr. Lisa Strickland since December of last year, and Hailey really loves going there. I remember when we were first seen and Hailey wasn't able to sit up on her own and Hailey never spoke. Hailey still grew a friendship with the staff and Doctors there. They truly care about Hailey and their patients.

Spine Wellness Center offered to sponsor a Picnic Fundraiser for Hailey and another patient named Cooper. Cooper is 15 years old and battling Leukemia. We were so touched by the generosity of Dr. Johnson and Dr. Strickland and all the companies, friends, and families that helped with setting up, and donations for the event.

When the day of the fundraiser came Hailey was very excited to be going to her carnival! We invited lots of friends and we were excited for the fun activities planned.

Sunday, May 26, 2013

The morning of Hailey's birthday I posted a letter to her on the blog. If you want to read it you can go HERE to do so.

I was so happy to be celebrating Hailey's 5th birthday that I tried to make it as fun and memorable as possible. The theme this year will be Princess and Pirates!! I always get made fun of when it comes to THEMES. Josh always says that the theme of a birthday party is BIRTHDAY PARTY and it doesn't need a theme, I say it does. I don't know how many birthdays I will get to throw. I say go all out if you can! This one was a fun one to pull off too. It's amazing what a little colored paper can do!

Here are some pictures of the set up I had going on. There were lots of Pink and Black, Rhinestones and Skulls!

Cannon Balls aka: Malt Balls! YUM!! These were my favorite and I had to make sure to buy these as close to party time as possible so that there were some left for the party! LOL!

I had "Royal Slippers" for the Princesses and I had Eye Patches and mustaches for the boys!

Princesses were treated to Royal toes and nails at the Princess bar.

Royal Eyeshadow for each princess. I'm a fan of the blue!!

This was a picture of the Royal Princess Make up and Nail table.

You must have a crown if you are a Princess!!

Pirate Jewels for the boys!

I loved being able to pull this together! SO much fun! I have said before how much Hailey LOVES make up!

What's a party without a cake? Even though Hailey uses a feeding tube I knew she would think it was odd if we didn't sing to her. The awesome Owner of Happy Thoughts Bakery here in Las Vegas was so great to come up with the cutest Princess and Pirate cake! The cake was SO YUMMY! She also makes the BEST Maple Bacon Cupcakes EVER!!! Keep Happy Thoughts Bakery in mind for your next event. Thank you Megan!!

Everyone was so thoughtful to get Hailey things that I call "working toys" This was velcro food that Hailey can exercise pulling apart and if she regains more gross and fine motor skills she can practice "cutting" the food with a play knife. She loves playing with this during her PT time.

Saturday, May 25, 2013

I read about a little ranch on the other side of town, called McKee Ranch, where you can see horses and feed them carrots and they also have chickens you can feed crackers to. It's free of charge so I thought it would be a fun family thing to do. I tried calling this place and leaving messages on the phone, and facebook and I never heard back. I didn't know if Hailey's wheelchair would be easy to manuver around there and I could never get an answer to it.

Once we got there I had wondered it the place was open. There was no one there but the gate was unlocked and it said OPEN. I could not find anyone there to ask any questions to. I read you feed the horses carrots, but I didn't know if there were specific ones or if there was a max quanity of who can eat what.

I finally found someone and tried to ask, but before I could finish my sentence she cut me off and told me to read the signs on the stables. Then she disappeared. We were the ONLY ones there. Feeling quite unwelcome we made the best of it an ventured in to see the horses...

Here's one:

Oh wait...that's a donkey! I love how donkeys Hee Haw when they want your attention. This guy was vocal and he is a kicker!

Hailey didn't mind these gentle giants and loved feeding them her carrots she brought. We brought 2 big bags of carrots and they went QUICK!

The horse above is Prego. She's gonna have a baby come December so we gave her extra carrots. She deserves them!

The horses come right out to see what you have. Once our carrots were gone they went back in their stables because we were unimportant without carrots.

Hailey really got the hang of feeding the horses. I'm glad she liked it. It was a good activity for her and she used her arms to feed them so she got some OT in!

Then the donkey wanted more!

Hailey is a horse feeding pro!

It was a little warm that day so we didn't stay long, which was fine because there was not much to see.

Cock- a- doodle- doo!!!

Then we saw this furry horse and Josh informed me it was a Clydesdale.

Gave him some carrots too!

All out of carrots! One reason I thought this would be a fun thing for Hailey to do is because we have something pretty exciting in store for her. Thanks to a donation made by Cooper Wine Company , Our Friends at Google (Vicki, Renee, Melissa, Paula, Judy, and Julie) and awesome fundraising efforts by Josh's Cousin's daughter Libby and her friends, we are able to sign Hailey up for Therapeutic Horseback Riding. Hippotherapy.

Hailey's Cousin Libby and her friends working hard to help Hailey!!

Our first lesson will be in June and I have been reading about it online.
Here is some of the things I found out:

Horses have been utilized as a therapeutic aid since the ancient Greeks used them for those people who had incurable illnesses.[2] The benefits of therapeutic riding have been dated back to 17th century literature where it is documented that it was prescribed for gout, neurological disorder and low morale.[3]

Horses provide a unique neuromuscular stimulation when being ridden through their one of a kind movement. Horses move in a three-beat rhythmic motion that mimics the human movement of walking. While riding, the horses stride acts to move the rider's pelvis in the same rotation and side-to-side movement that occurs when walking. The horses adjustable gait promotes riders to constantly adjust the speed to achieve the desired pelvic motion while promoting strength, balance, coordination, flexibility and confidence.[5] One does not have to ride to achieve the desired effects of therapy. Horses can act as an aid by giving those with disabilities a companion to care for. Grooming such as brushing, bathing, and currying aid in joint range of motion and have a relaxing and calming effect.

Isn't that kind of amazing?! I am very excited for this and I HOPE Hailey enjoys it. It's something I have been thinking about doing for a long time and moneywise it has never panned out. We are so grateful for Friends, Family, and Strangers who help pull together when we are in need. You guys are the best!

Thursday, May 23, 2013

During our Make a Wish trip, we had the absolute pleasure of staying at a Village designed especially for wish kids called Give Kids the World. This place is magical in every way. The vision that founder Henri Landwirth had to improve the lives of those in need is found in every inch of the village. This is the sign you see as you approach the gates of the village.

Once you arrive you are greeted by one of the employees and your child is given a very special Mouse. This is a photo of where you register and you go for your orientation. When we arrived it was pretty late at night and we were so hungry. They said that we would be taken to our villa and we would have food delivered to us.

The theme at the village is Welcome Home. Every time you leave and come back that's the way you are greeted. They want you to feel as if you are at home. They provide EVERYTHING you will need in the villas. There is a full kitchen with plates, cups, forks, knives, spoons, a dishwasher and soap. There is a washer and dryer and they give you detergent. There are 2 bedrooms with sheets, blankets, and pillows. There are 2 bathrooms with towels, soap, shampoo, conditioner, and body wash. Hailey's room had bed rails, a wheelchair accessible shower, and a whirlpool bath! This villa was nicer then our own home!

Welcome Home Hailey!!!

The magic of the village appears once you know the story behind everything. You can visit Julie's Safari where they show movies, and have meet and greets with characters from the surrounding theme parks and even Santa!

The ice cream palace where you can ice cream for BREAKFAST if you want! If your child would like an ice cream sundae, ice cream cone or even a milk shake stop on in and get which ever your heart desires. Open from sun up to sun down and free for the family!

A big percentage of children that visit the village are like Hailey and in wheelchairs, but there is no boundaries for these children. They have a Merry Go Round that accommodates these special children who don't usually get this opportunity elsewhere.

You can just slide your wheelchair right into a special spot on the merry go round.

This is Katie's Kitchen. The story behind this special place is told below. I copied this from the gallery.

In 2005, 7 year old Katie, visited Give Kids the World. In a letter to the Village her parents wrote, "We were so grateful to have a brief time to forget the nightmare we were living. The Village became a sanctuary from the needles, pills and radiation masks. For one week we were a normal family, living life to its fullest. For one week we felt free to laugh and embrace and build those last few precious memories. You can't put a price on that." Today Katie's Kitchen is managed and funded entirely by Boston Market and serves over 80,000 delicious, nutritious meals annually to the wish families.

Breakfast, lunch, and dinner is provided at the village for families and even guests of families. Guests have to pay $5. We had Josh's whole family with us and they were able to eat with us for that small cost. I had never had Boston Market before, but now I wish I had one near by. Every time I said how much I loved the meatloaf I'd get a funny look, but I really LOVED the meatloaf! LOL!! Inside Katie's Kitchen you see such a fun and whimsical place. Each table has little peppermint candies that were placed there by hand. Around the perimeter of the ceiling stuffed toys were donated and placed there to stay.

There are activities every day at the village and one that we participated in was Horseback Riding at Keaton's Korral. When Hailey wasn't sick she had the opportunity to ride a small pony and she really loved it. There are a ton of benefits for horseback riding for children with neurological diseases and disorders, which I will blog about another day. I knew that I wanted to give Hailey the opportunity to do this. Before we left for one of the theme parks we went horseback riding.

This is also entirely free to the children. They had helmets and also a tandem rider that would help hold Hailey up. The only time Hailey was unsure was when she couldn't see me, but once I started waving for her she perked up.

There is a place named after the next girl I will tell you about. It's called Amberville Station, which is a fun center with video and arcade games. Below is Amber's story.

Amber Holman was a girl who visited the Village in the summer of 1990 when her older brother, Travis, was a wish kid. Less then a year later, Amber was diagnosed with the same incurable disease that had afflicted Travis. The Holman's returned to the Village in 1992, this time to fulfill Amber's wish. The family's courage moved Henri, and a relationship formed between them. In 1996, the Village unveiled plans to build a fun center and Henri named it the Amberville Train Station as a tribute to the family's faith.

This was the pond outside of our villa. They stock it with fish and kids can go fishing here. This was another thing I wanted Hailey to do. Her great grandpa was quite the fisherman and I thought it would have been awesome to share that with her, but sadly, we ran out of time...

In sunny, hot, sticky, Florida pools are essential! They have zero degree entry pools and PVC wheelchairs so that all kids can go swimming! They also host a pool party here once a week!

The next area of the village is Matthew's Boundless play ground. The story is as follows:

When the Hasbro employee who brought his family to the Village in 2006 on his son's wish returned and told all of his fellow Hasbro associates about their experiences, it helped to further solidify the relationship with GKTW. The wish child, Matthew McGowan, was actually the one to receive the first Give Kids the World Edition of the Candy Land game as it came off the assembly line. As the relationship with Hasbro strengthened, they "adopted" Winter Wonderland and also provide over 22,000 other gifts annually to include in the Village celebrations each week.

After Matthew's wish trip, it was decided that the new boundless playground would be named in his honor. The dragonfly that sits atop the entrance signs to the playground represents a story that Matthew's sister read at the Grand Opening.

At the boundless playground the wish kids are invited once a week to play the worlds largest game of Candy Land! Each child also goes home with their very own Give Kids the World Candy Land game!

There are 2 very special bunnies that live at GKTW. Mayor Clayton and his wife Ms. Merry. Mayor Clayton celebrates his birthday every week at GKTW with a huge birthday bash. Ice cream, games, and crafts along with a happy birthday song. Part of the perks of being the mayor and his wife is that they are there to help every kid enjoy the activities planned. You can even request your wish child to be tucked in by one of them at night time! Isn't that amazing!!

We felt right at home the moment we stepped foot at GKTW. This place has a special feel to it.

The next part I always want to tell people about, but I tried it once and broke down into tears. It was the most special part of the trip. Every wish child gets to have a star placed in their honor inside the castle of miracles by the Star Fairy. Her story is below in this picture. I'm sure you can enlarge it to read, it would be hard to retype it all.

There are over 100,000 stars that were placed by every child who had stayed at the village since it's opening. The castle glows with all the stars and it's very bitter sweet. You are amazed at all the sick children there are in the world and amazed that GKTW has helped so many.

There are just rows and rows.

I had heard an interview with someone where he said that he wishes they could close the doors to the village, because that would mean there were no more sick children.

The day came when it was Hailey's turn to make a star and have it placed among the others. We went as a family and Josh's grandparents were there as well. You are given the star at orientation and you take it with you to the castle of miracles. The volunteer which happened to be our favorite Jo, was there to help us.

I took Hailey's star and I wrote her name on it. Hailey also wanted hearts on it. I put 5 hearts for everyone that was there as her family.

I then showed Hailey what it said and she gave it a kiss.

I placed it in the magic wish box and we were told to think about a wish for your star.

Well...thinking of a wish wasn't hard, I knew what everyone was wishing for on that particular star.

We closed the box, placed our hands on top and whispered our wish to the star fairy. The box starts moving and then stops. you open the box and your star is gone. The wish fairy appears on a screen and tells you that she had heard your wish and will have your star placed with the other children of GKTW and you can come back tomorrow to find it.

They give you a picture to take home of your star.

The next day we got a letter in the "mail" from the Star Fairy asking us to come see where she put your star.

You scan your mail and the volunteer pulls it up on the computer.

Hailey's star is with the second cluster of stars.

Another wonderful day at the Village is Thursday nights. Thursday is when Santa comes for the winter wonderland activities, and you thought he only worked 1 day a year...tsk tsk.

Santa said that Hailey was such a brave girl that she deserved an extra present. She was able to pick from a huge display of toys. Her pick was a baby doll!

You know how we love our dogs. Hailey also misses her pups when we have to leave to stay at the hospitals. They have lots of therapy dogs that go to the village so we saw as many as we could.

At the pirates and princess party there were games, music, and dressing up for all the kids and family! I told you there is something planned every single day at the village. No need to go to the theme parks!

This was after our day at Universal Studios and Hailey had to introduce Fluffy to everyone!

Everyday is filled with something to do. Every week they have Halloween, a birthday party and Christmas. Lots of times the holidays at the village are the last ones for the kids visiting. Every Thursday I think to myself, "today is Christmas."

No magical place is complete without a wishing well. This is in the castle of miracles too. Also inside they have a beauty boutique where you can get your face painted or hair and nails done. You can also get a tattoo!!

Hailey and her ever lasting smiling face!

This is a picture of the hug Hailey and Jo shared as it was Jo's last night volunteering! We miss you Jo!!

There are always gifts at the village for kids. We had a whole suitcase designated just for souvenirs and toys!

All the information I got on the village and how certain places came to be was from the Gallery of Hope. You can not go in here without a full box of tissues!! You hear testimonials and stories from families on the experience and you are so overcome with emotion I dare you to not cry!

Hailey loves tattoos. She takes after her father. Hailey wanted a pink tattoo but also told granny she was getting one as well. Not asked, told.

They ended up getting matching tats.

Granny is such a great sport!

Another place in the Village is Marc's DinoPutt golf course. I wanted Hailey to do this to, but again we ran out of time. There were not enough hours in the day. :0(

The story is below:

After visiting GKTW Village in March of 1999, Marc McConnell returned home to Loupe City, Nebraska and prayed that he would conquer cancer so that he could return to the Village as an adult and volunteer to bring joy into the lives of many other children. For 3 years Marc was well on his way to upholding his pledge. he spoke to many groups, asking the audience each time he spoke to commit to being an organ donor and speaking about his time at Give Kids the World. He was chosen by the National Cancer Society as "Survivor of the Year" in 1999. Give Kids the World and Universal Orlando decided to name the seven-hole golf course to honor his wish of never being forgotten.

Amazing!

Give Kids the World Black and White Gala will be on Saturday June 1st. All the money raised will help GKTW grant wishes for more children with life threatening illnesses. They will have food, entertainment, and silent auctions. One of the items in the silent auction is a handprint plaque that Hailey and I made. There are so many incredible items to bid on and you can even bid on them via your cell phone. Register it before June 1st to be entered in a drawing for a wonderful vacation!

The village is so awesome because of the wonderful volunteers! I know that I will be back one day to volunteer at the village.

This post marks the end of our Make a Wish trip. It seemed so surreal to me that my child was going to be a Make a Wish child. I wouldn't have ever thought this would have been something that I would have to endure in my life. As hard and terrifying as it is to have a child with a terminal illness the support that was given to my family is more then I could ask for. I've said it before, but Thank you isn't enough for what the Make a Wish Foundation and Give Kids the World did for us. These memories are forever. Seeing the other families that were there you get a different perspective on what "hard" is. I had thought that what Hailey is going through is hard, what we have to see her go through is hard. You don't know what hard is until you see a child going through much more then your child. Hailey is cognitive and was able to enjoy this trip and we talk about it all the time with her. She loves looking at the pictures we have and I am thankful we have them. This trip was more then we could have asked for or even imagined. If there was a word that was more then Thank you I would use it, but until I think of one...THANK YOU!! From the bottom of our hearts!

I promise I will be back one day to volunteer!!

If you would like to donate to Give Kids the World you can do so HERE!!